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Carers Week: how support transformed my caring experience

09 June 2014

Research for Carers Week has highlighted that over half of carers said they have not had support. When Anna Stack and her sister took on the care of their Dad, they faced a three year struggle before they got help. The 52-year-old from Gloucester tells how their caring experience was transformed when they finally got support.

In June 2011 we lost my Mum, aged 84, after her battle with breast cancer. We were grieving the loss of our mother and our father was suffering hugely the loss of a wife, who had done everything for him for 66 years. My sister and I were, overnight, left with the responsibility of our elderly father who at 89 years old was almost blind due to Glaucoma and increasingly frail.

We were, to say the least, bewildered, totally ignorant of the responsibility and the commitment we were about to undertake. We didn’t know what to do and nobody seemed to be able to offer us any advice. My father didn’t have much in the way of savings and we knew we would have to rely on his pensions to fund the necessary day care. But my father also needed care at night and my sister and I decided we would share this by spending half a week each sleeping at his house. This was extremely difficult as we both have families, both children and grandchildren, and demanding, full-time jobs. Dad wanted to stay at home, in his familiar surroundings, which was increasingly important as his sight worsened.

After a few weeks both my sister and I were extremely worried about the pressure upon us, and asked Dad’s GP for advice. We were told to contact social services, which we did via a helpline and were told Dad would need an assessment of his needs. Social services agreed to visit each day for six weeks and said they would help my father to ‘help himself’.

My sister and I were left distraught having watched a staff member trying to ‘train’ my father to cook using a microwave (not suitable for a blind person), make a cup of tea and do general kitchen chores. He quickly became tired, distracted and was unable to digest what he was being asked to do. He could hardly walk or stand unaided, he was practically blind and still grieving, and we felt it simply unreasonable for him to attempt what was being asked.

Dad became very depressed and incessantly said he wanted to die. When we discussed the visits he cried, saying he didn’t want the ladies coming in. We decided to stop the social services funded visits and felt there was no alternative other than to pay for alternative day care from Dad’s pension and savings. We called again on his GP who prescribed Dad anti-depressants but couldn’t offer us advice regarding support or help.

At the end of July 2011 my sister and I managed to find a close family friend who offered to help with an hour in the morning and over lunch. My sister and I continued with Dad’s evening meals and sleeping in. We also relied on Dad’s wonderful neighbours who popped in to see him, read or just chat to him.

Up until 2013 we had received no help at all, not because we didn’t want any, but because we had not been advised what help might be available. As my father became needier my sister and I knew we would not be able to cope much longer by ourselves, we were both exhausted mentally and physically and also my sister’s husband had become ill with a serious heart complaint.

We discussed our situation with a privately run home help company who advised us to contact the County Council’s Adult Care. A visit was set up with an assessor whose excellent support we could not be more grateful for.

Over a period of two hours on her first visit, we talked through Dad’s needs. He was now completely blind, had aged considerably, lost a lot of weight, was becoming slightly incontinent, had bowel problems and was suffering short term memory loss. He was also suffering worsening mood swings which we felt were maybe because neither of us could look after him full time. The doctor visited on numerous occasions and altered his tablets in an attempt to ease the situation.

The assessor was exceptionally empathetic and helpful, showing great compassion towards Dad and took time to talk through his difficulties with him directly. She also kept my sister and I informed at each stage of the process. A month later we received confirmation that my father was entitled to four nights paid cover per week. I was given full advice on how to manage the direct payments for these and then took the next step and employed two staff to help with night care.

My sister and I continued to provide some night care together until my sister found she could no longer care for Dad and her husband as his illness progressed. I then continued the night care for a few more weeks, however three years of unrelenting commitment were beginning to take its toll and I decided to contact social services once again. We were visited by the assessor who had previously dealt with us and were able to get some further night support.

Since December 2013 my father has deteriorated both physically and mentally. I have been dealing with the direct payments, carers pay and the paperwork relating to our carers. I also manage the day and night rota, looking after my father’s banking and finances and the day to day running of his home (e.g. gardening etc). I cover absences, and Dad’s tea three times a week and call in every evening after work to get him ready for bed. I shower him once or twice per week and deal with any hygiene issues when I’m there (cleaning his commode etc). This has an impact on my work life as I am always tired and tense and always waiting for the next problem to occur. My sister has now returned to help, doing one tea-time per week, ordering Dad’s prescribed medicines, and helping with the care worker’s time sheets.

Realistically Dad, now 92 cannot be left alone for more than an hour and a half. He cannot see anything and his physical ability is very poor. He has to be guided through the house and helped to the toilet, he is painfully slow and painfully thin. He has memory loss and still has very bad mood swings. He sits in one armchair most of the day and when it is sunny he is taken outside to enjoy the sunshine. He still has visits from neighbours who try to keep his brain active with crosswords and talking about politics and running through the daily newspapers etc which he enjoys very much.

I made a promise to my mother to look after my father and a promise to my father not to allow him to go into a care home and because of this I try my utmost to ensure that these promises are not broken. My experience at the outset can only be described as an uphill struggle. What transformed this experience was the support and help of one social worker. She pushed and pushed for us. Without doubt we needed better help at the beginning, when we lost Mum and it took three years before we got the right support. With the support of that one social worker our experience - though not entirely without pressures, in particular around direct payments – has been so much more positive. I can’t thank her enough.

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